Wednesday, April 4, 2007

The Heart is a Muscle, Redux

It was just over two and a half years ago that we learned that my nephew, Tanner, has Duchenne's Muscular Dystrophy, and that he will die from it. He was not quite five years old at the time. We were devastated. Wrecked. Heartbroken.

What very nearly got lost in the distress of those days and weeks and months was this: the decision that my husband and I had made, just weeks before learning of Tanner's diagnosis, to start a family of our own. I say very nearly, because that decision wasn't forgotten about entirely: it was pushed to the sidelines, too troubling a project to continue to consider openly. Too troubling, because with Tanner's diagnosis came provisional diagnoses for both my sister and I: we were likely carriers of the gene that causes DMD, and as carriers, any male children that we might bear had a one-in-two chance of inheriting the fatal condition.

My husband and I immediately ceased all talks concerning a family of our own. We needed to come to terms with Tanner, first. And we needed to learn more about what it might mean if I carried the gene. I underwent genetic testing, and genetic counselling. Months of it. I learned more about what I already knew: that if I did carry the gene, as was likely, I would likely pass it on to any son that I might bear, and that he would die from DMD. I also learned that as a carrier, I would have diminished muscular capacity myself. Weaker lungs. Weaker heart. That I had a history of respiratory weakness that worsened with illness was regarded by my geneticist as a very bad sign.

At the time, the physical weakness that I might suffer due to such a condition seemed unimportant. I was concerned for Tanner, and for any future children I might have. When a close friend expressed horror at my announcement that Husband and I had begun reconsidering starting a family - her argument, that I was irresponsible to consider bringing such a child into the world, and that I would no doubt be compromising my own health to do so - I was unmoved. I would love any child that I might bear, no matter how brief or limited his life. And I would risk my life to have that child. I would give my life for that child. I knew this, in my soul and in my heart.

My tests came back more or less negative, in a complicated odds-on-odds-off genetic calculation that was at once reassuring and confusing. And we went on to have WonderBaby, and have been celebrating life ever since. But I've never forgotten my commitment to do anything and everything for my children, including risk my life. And I've never forgotten the fear that attended the making of that commitment. But fear, now, is entirely bound up in love, and so much more complicated.

And so when it felt that my heart was giving out earlier this week, the fear came rushing back in a torrent muddied by love and desperation. I was terrified. I had overtaxed my muscles, I thought; the geneticists had erred or misinterpreted (as they did with my sister), the muscle that is my heart was failing, I would die, and for all of my commitment to giving everything, everything, to the care and love of my baby, I would, in the end, lose her by losing myself. The hours between the first moments of the attack and the moment when the ER doctor said your heart looks fine were as terrifying (more than? a calculation that I cannot make) as the darkest moments of my troubled pregnancy.

It seems that I have nothing immediate to worry about, for now. Whatever happened, it did not damage my heart, it did not weaken my heart, it did not hurt my heart in any manner other than figurative. My heart, they tell me, is strong. The attack was not heartburn, nor was it anxiety (which I knew before I even hit the ER - I have extensive experience with both these plagues), but neither was it cardiac arrest and that, my friends, is tremendously reassuring. There is still, however, enough unknownness to leave me discomfited, to keep me gripped, however loosely, in the bonds of anxiety. I hope that it turns out, after more poking and prodding, to have been a muscle cramp, one that has nothing whatsoever to do with dystrophies or other muscular degenerations. I hope that it's nothing, nothing at all. I hope that all of this hand-wringing is just that - the hand-wringing of a pathological hand-wringer.

Because although my heart remains undamaged, it was weakened, just a little, by that frenzied little dance with fear. I would give my life, in a heartbeat, for WonderBaby - my own life is, in so many ways, much less precious to me than is hers. But to be pulled away from herprecious life seems unbearable, in a way that I hadn't quite fully appreciated until that tremor of a heartbeat rattled my soul. That other parents face or have faced that rattling to the full - feel that pull to its end - and live on with their broken hearts still beating astounds me and humbles me.

Gots to be gentle with my ma. I needs her heart.

I just need some rest now. Will resume normal blogging activities soonest.

Also, I am so sorry for scaring anybody the other day with my ohmygodamidyingiamsoscared post of the other day. But it was so necessary to vent my anxiety, to put trembling hands to keyboard to make the minutes fly by more quickly and to slow the pounding of my troubled heart. That you were all there, listening and - so immediately - whispering soothing words of comfort, was so, so wonderful.

Such a community. Whatever else we might say about it - and we said so, so many things this past weekend, the little group of us in Kentucky - it is this: it is intimate, and warm, in the most wonderful and unlikely ways. I'll have more to say about this when I'm back on my fingers.

81 Comments:

I'm so sorry I am just reading the posts today about what you went through and that it was so terrifying. I'm glad to hear that they think things are OK, but still not knowing exactly what was going on is a scary thing to deal with, especially as a mother.

My thoughts are with you and your family and I hope you are feeling better, both physically and mentally, soon.

I never feared death until my babies were born. Now I am terrified of dying, because it means that my babies would lose their mother. But even more than fearing my own death, I am gripped with fear that my husband and I should die at the same time. We travel on seperate flights - no joke.

I'm not worried about you, your heart is big and your heart is strong - I know this from reading your blog. xoxo

So glad it wasn't anything serious, though I'm sure the lack of diagnosis isn't 100% comforting.

Don't underestimate the power of fighting to stay alive for your children. I know two very close family friends who beat their diagnoses by long shots - more than doubling their time to live in the face of stage four colon cancer and pancreatic cancer. Wanting to stay with your children, wanting to meet your grandchildren...it can be a powerful force.

what a rotten few days you have had. I hope you can get some rest and experience some peace as you process it all.

Another commenter said what came rushing to me as I read this....I too never really was afraid of my mortality until I handed over my heart to my two children. My heart leaps into my throat at the thought...

Motherhood takes us to dark places, doesn't it? The very brightest and the very darkest. It's made me feel simultaneously like the strongest, most capable person in the world - and the most frightened, most vulnerable person in the world.

once again in tears while reading. This time just wanted to comment on how fabulous your writing is, and how beautiful your family is. You capture motherhood so well with your words. Thoughts and prayers are with you.

I spent a night, about six weeks after Cakes was born, thinking I was dying. It was unbelievably saddening. If that happened today, I think it would be ten times worse now that I've spent almost two years with her.

Very glad to hear you are physically OK for the moment. Having had a similar incident, if you need some long distance hand holding, email me as I've been through the heart wringer and ER trip and follow up visits and "We don't know what is wrong" nightmare, hysteria and fear. And the fear of leaving my kids was the strongest fear I have ever ever felt in my life.

Oh, I'm so glad that you're better. I came late to your last post and thought I'd wait it out to see what happened.

And, yes, I've faced the genetic counselling and the questions that people pose (outwardly or not) about your motives for having children when you have a genetic condition. And, yes, I would give my life for her but I worry that, in doing so, I would hurt her so much that she might never recover.

And, yes, we are here for you, in whatever way that happens on this strange frontier.

Thank goodness you're okay. I was touched to read about your committment to begin a family, as my husband and I are dealing with timing and the fears of starting our own. I often wonder about the what-ifs concerned with having a baby and those things that we cannot control. It's scary, but also comforting to know that everyone has these and that the reward outweighs the fear ten-fold once you have your own WonderBaby. Thanks for sharing and making this decision a little less scary. Wishing you rest...

Something I did not say the other day when you were so heartrendingly frightened was that I had an infection a year ago that spread to my heart and I nearly died and even with that I am okay now. Bad things can happen. I am very glad and relieved to hear that you are okay, and I hope that you can rest up now and feel better and safe again.

You're right about the incredible community here. The WAY I've worried about you, thought about you, during these last few days has astonished me: I've never even met you! But I somehow I feel I know you well.

Mortality is some scary stuff to think about, esp. with such a sweet little one counting on you to be there. My own mom lost her mom to TB when she was just 5; her mom was 40--the year I will turn this summer.

Take care of your heart. Take time off and just enjoy Wonderbaby. We'll be here when you return.

Rest and feel better. As someone whose mother died when she was 15, and mom was 37, the fear of leaving my children motherless is sometimes incapacitating, and particularly so since I do have a minor heart condition. Be well and love WonderBaby - hugging my fishies always makes everything better.

Posts like this are the reason I slog through 100+blogs on my trusty Google reader. Tolerating the great big mountain of uncertainty in the center of life is tough indeed. But from the sounds of it, your heart is working perfectly where it counts the most.

jaysus...what a ride you've been on. fragile, precious thing...this life.

i was moved by what you said about loving any child you might have, no matter how brief or limited his life. i only had Finn for hours, but he brought joy i couldn't have imagined possible in that situation. just so you know. just in case. should the complicated tests not have told you everything, and should the much anticipated (here, i mean) if not fully decided on #2 be a boy and there be problems...oh my heart will ache for you, but i assure you, it will still be worth it.

So relieved that everything is okay with you.I understand the terror of our own mortality. I can't imagine leaving our boy. I think it's intensified by the fact that my husband lost his mother when he was only 6. Unfortunately he knows all too well what it's like to be without a parent.

As far as scaring us all with the last post. yeah, you did. But that's what we're here for.

I'm glad to hear you are okay and I hope they can figure out what cause your problem to begin with. I can relate to your feelings as I'm currently awaiting some test results and am pretending I'm not concerned about them. Give Wonderbaby an extra squeeze.

Yesterday, I wrote about valuing each day (in relation to cancer, which has hit many close to me), and just today, I was already harried and worried about nonsense at the office. Deep breath to remember that getting to be with our children is priceless.

I missed this when it was all happening (which is probably best as I would have likely had a panic attack myself worrying about you...) So I'm deeply relieved that all is generally OK. Get some much needed REST. Pascale

I'm so glad you're feeling better, albeit uncertain about what's actually going on. So strange to be reading your blog because I'm going through almost the same thing this week myself. Have had major palpitations and skipped a few beats; the doc thinks it's my physiological way of reacting to stress. Further testing is underway but EKG was normal. My thought this morning (and every day) was: "If I can make it another 15-20 years till my boys are adults, then I'll go peacefully and without a fight." Just have to get them safely into adulthood...

Dude, that sucks. I think it might be your body giving you the signal to slow the fuck down. Honestly, I watch all your accomplishments and as an over-achiever myself, I wonder, "How does she get it all done?" All the accolades and adoration in the world, not worth your life. You've got fans, you've got success, what more could you be striving for? Time to chilax on the world domination front a bit.

Reading this with tears in my eyes...you sum up magnificently how many of us feel facing mortality, when there is so much more to do and see and be. So happy for you and your family that it is not something more serious (and for us as well). Big cyber-hugs to you.

I'm so glad your heart is *fine*. I've been there with the scare stuff and it makes everything look far away down a long black tunnel. Your little one is so, so gorgeous, and I am sure you will have a long life with her.

I am so sorry to hear about your trauma! I am glad that you are OK! I hope they figure out what happened soon so you can have peace of mind. I can only imagine what it was like as I recently went through a similar scare about my mamogram. That time waiting is a bitch and totally screws with your head and heart in ways that no human should have to go through.

Something in my computer has not allowed me to comment lately and I've wanted to offer words of reassurance and comfort. You should take it easy and rest your heart and everything else. We'll be here when you get back.

Oh Catherine...I have been out of the loop this week. I just read through your previous posts. I am breathing a sigh of relief for you that everything turned out ok. Motherhood certainly is a constant reminder of our mortality. Rest up in KY....

I am so sorry that you had to go through these heart wringing moments - but glad that finally you were able to hear good news.

I have been reading your blog for a couple of months, not sure how I came here though....I don't read that many blogs. I havent posted before though, but am compelled to now (like that's a bad thing!!)

I had to face the same decision that you talked about thinking of IF you were diagnosed as a carrier of DMD. You said "When a close friend expressed horror at my announcement that Husband and I had begun reconsidering starting a family - her argument, that I was irresponsible to consider bringing such a child into the world, and that I would no doubt be compromising my own health to do so - I was unmoved. I would love any child that I might bear, no matter how brief or limited his life. And I would risk my life to have that child. I would give my life for that child. I knew this, in my soul and in my heart."

I was so moved by those words, even though it was the complete opposite of what I decided.

I was 25, married 3 years when my mysterious throwing up and huge loss of weight for the past one year, was diagnosed as a rare congenital condition where there is an absence of or very limited number of cells in the intestine (in my case thankfully confined to the duodenum alone) which basically was now not allowing food to move down beyond the duodenum which after enlarging about 10 times its normal size finally gave up and thats when the throwing up started and the consequent loss of weight.My mother had the same condition and died after multiple surgeries when I was 7, and I obviously inherited it, though none of this was known till I was diagnosed at 25. I didnt even have any symptoms before that.

To cut a long story short, I beat all the odds, since not able to eat orally and dependent on IV and direct to intestine nutrition for 2 years, my weight rapidly dropped to about 60 pounds and I wasnt expected to surive, leave alone survive and make it through multiple surgeries, the last one being a 3 hr surgery which was itself experimental in nature with the limited knowledge at hand.

I survived and am fine today, though there is no guarantee that the symptoms might not recur if the problem reappears due to some reason.This was in 2003.In 2004, I made the decision not to have a biological child precisely because I don't want to take any risk that the child might be born with the same congenital condition ,which my mother had and I have too. For my mother it proved fatal and for me it was a trial by fire. The agony my Dad and husband went through was unimaginable.There was no way I wanted to willingly take the risk (25% was what they told us after genetic counselling) and also, since its such a rare condition, there are no tests available which can diagnose this in the foetus stage itself. (even if I were of the mind to terminate the pregnancy which I wouldn't have)And also, (which was part of my husband's reason for deciding not to have a biological child) the thought that if my pregnancy accelarated the problem once again, and I might not be there for my child at the end of it....that thought was too much for me to bear.Kudos for your bravery though, and I am glad that you didn't have to worry about Wonder baby!We adopted a baby girl last year and she is now almost 2 and I give thanks everyday for the miracle that brought her into our lives. I completely understand when you talk about the fear that grips your heart when you think of losing her by losing yourself - its there at the back of my mind....

My sisters both suffer from a hereditary genetic defect that I somehow managed to avoid. We did all the testing twice before we started trying for a baby, and all the tests say I'm fine. That doesn't stop that little voice in the back of my head from piping up every now and then - what if they were wrong?

I'm sorry you had such a scare. I hope you're feeling immeasurably better now. Take care of yourself.